Functional Movement Disorder needs so much more awareness!

This morning I woke with a fully numb left arm, painful calf muscles, pain in the top front of my forehead, and a very heavy head which comes from the middle left side of my head which sometimes feels like it is being pulled downwards toward and through my neck down my back!

It all makes me so very tired, my body is constantly fighting itself and the tiredness is the body trying to repair itself and regenerate.

Does anyone else have the problems with their head like me?
My Drs still don’t know what it is, but think it relates to my seizures?

Last week I had a sleep study where I was filmed and all wired up, with six wires on my head, three on my forehead, two each side of my face, one on my chin, then a wire down my leg.
Lastly I had a strap put around my chest, this was to get readings of my chest rate and breathing.

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My sleep study is primarily to check for Sleep Apnoea, but also to check electrical impulses in my head and spasms in my body.

There are other things too, but I’m waiting to hear from the Consultants as I don’t want to get my hopes up.

This disorder certainly is draining, and you never know from one day to the next what your body is going to throw at you. Functional movement disorder is a neurological disorder, has so many symptoms, and I have a lot of them.

Though I am still fighting to make sure I do not also have an organic part to my movements, that I don’t only have a psychological disorder. As I’ve had spasms for so many years, years before what is thought to have been the psychological reason to my illness.
I will still continue to research this very weird disorder, a disorder that is very similar to PTSD.

Functional Movement Disorder needs so much more awareness!

I Am Broken

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This is a blog post I just added at: www.dystoniasufferer.com
I don’t blog as often now, it’s just going back over old ground. I only blog now, when I really feel what I write is worth sharing.
I hope my words may resonate with others, and make you feel less alone. Andrea x
…………………………….

As I lay with my arms outstretched, crouched at the side of the bed.

My head down and tears fully flowing, with me sobbing and not knowing how to stop.

I am a broken woman!

I still have flashbacks, I still relive moments from my past.

I want my girls to hold and hug close, and never let them go. He hurt us too much, way too much.

Shock, pain, hurtful late night calls. Constant notes through the door, hounding me to meet up. After what he did!? 

The suicide threats he made, and in front of our girls!!!! Him asking to be past a knife to slit his wrists.

My daughters turmoils, the total and utter disruption to their lives. 

The total break of my marriage of 21 years. 

The following mess and trying to hold on and keep going. All that followed, the house, a roof over our heads. Trying to put food in our stomachs, how I deprived myself to feed my daughter, 

Holding on to a job where I was being harrassed by my boss, all whilst going through my troubled home life.

The divorce proceedings I set in place, and stood my ground. Getting some self esteem back, finding me again. 

FMD and PTSD are really, one and the same. I go through similar things.

Times like this I can’t stop crying, I just want out.

But my saving grace, a wonderful man I met who whirled me off my feet. Gave be confidence and showed me how to love again, made me a person who could feel again after I had shut down.

Only I’m not a full person anymore, I’m missing  bits. I’m broken, my brain has memory problems mostly short term. 

But there are things that happened during my marriage break up, that I have no memory of.

Things that have happened whilst with my new partner, I have no memory of.

It’s the scariest thing, not knowing part of your life but others do.

It’s the scariest thing, having flash backs suddenly out of the blue. That interrupt and distort your day, change your feelings. Make you go so low, it’s a struggle to keep getting back up.

It’s the scariest thing, having your body suddenly turn against you. Start breaking down, not moving properly. Not moving how you ask it, or moving without you asking!

It’s the scariest thing, living in my world. Every day, for the rest of my life!

I am hurt, still. 

I am broken, always.

I don’t really know who I am anymore

I just had to blurt this and get it out. 

Real life is hard, nothing is all roses. Not in my world.  

But I love all my family dearly, my girls especially. They make me a proud Mum, they have moved on and are now living their lives.

My elder sister I have to thank for looking after me so well in the first weeks, with no thought to disrupting her own life and work. She stepped out and caught me as I fell, whilst cradling my girls too. Thank you sis with all my heart xxx

Me I still struggle, and probably always will. Becoming physically and I guess mentally disabled, from something that happened in your life, to change the way your brain works. Well, it’s still very hard to grasp. 

So yes, I have my break down days. Today just happens to be one of them, and I felt I needed to set it free.

Maybe now I can move on?

You only have to look at the tags to see all the problems, and disorders I live with. So only time will tell.

Thanks for reading as always, and take care X.

What Is Functional Movement Disorder

Body Movements Pic
I was eventually diagnosed with the “Functional Movement Disorder” part of my problems on 17th May 2012.
I was only given a name of a Dr Jon Stone, and told to Google him to find a site that he did about the disorder. I was given nothing else, nothing at all!
I was in shock with my diagnosis, had no idea what it was that I had. Only had a name to Google, no leaflet or paperwork to give me information, nothing!?
Feeling distraught, upset, mixed up, and extremely distressed following being given my diagnosis. Also just having been informed that there was no treatment they could give me for it, other than for me to go off and read this website. That I would be referred to be seen by a Neuro Psychologist, and have a follow up appointment with my Neuro Consultant in approximately 4 months to check on how I was going as I was an interesting case!

I have now had months to both read up all about my disorder, to digest the
information
and try to adjust my life accordingly as I have become disabled over time.

Other than the one site I was directed to read (found below), there is actually very little else to be found on Functional Movement Disorder. Neither could I find any movement sites that listed Functional Movement Disorder on their movement list. Neither was it listed as Functional Neurological Disorder, as it is of course a Neurological Disorder. There is no where I could find of personal experiences on websites either, rather than just all the medical and technical terms and explanations. There is if course the forum on Dr Jon Stones site, there are also a couple of good Facebook Groups that are great to chat and discuss with other sufferers like yourself. But I thought I might find a website set up somewhere, that gave more personal insight. Rather than just all from a Drs view point who has an interest in the disorder, but not actually go through it.

I wanted more, I wanted a site that just told me exactly what was what. With some patient insight on what this disorder included, and how they deal with it in their life. Or not deal with it, so how they get through the struggles and miss understanding of a little known disorder, that even some of the medical society do not know about or understand either.

So I have set up my own site this site, and called it plain and simple
Functional Movement Disorder

With this site I hope it helps give an insight through the mind of a sufferer. That it gives information in a more simple way to understand, and with the information of the diagnosis process and follow on treatment sessions and help.

The site will grow over time, but more from a patients view point. I will also include any interesting information I find along the way.
Do check out the website links below though, for all the information it offers is extremely valuable and very helpful.

This is information from a website I was directed to by my Consultant Neurologist.
The site has an enormous amount of information, which is invaluable for people with this condition.
I hope it can help others to understand this condition, as much as it has helped me.

Link 1 – http://www.neurosymptoms.org/movement-disorders/

Link 2 – http://www.neurosymptoms.org/symptoms/

___________________________________

Aww I Hurt


Image from Google pictures.

I’ve been busy all week, trying to write about my weekend away in London over the Bank Holiday weekend at the end of May.

I will get it finished eventually, or maybe break it down into parts to get it posted. As it is all about mobility issues I had, that even though everything was arranged for accessible, nobody seemed to care. Well most! 

But at the moment this morning I’m in so much pain! 

I had massive abdomen spasms last night, ones where it pulls the whole body up and holds it there until the muscles relax again. Then it happens over and over! If I could do these myself, my body would look great! 

Only I have no control over my body spasms, they are involuntary just the same as Dystonia. Though because I am diagnosed with Functional Movement Disorder, they tell me it is Functional Dystonia

I also have eye spasms (Blepharospasm), and Hemifacial Spasms. Plus I have Cervical Dystonia, all of which I have Botox injections for. I have had spasms in my left side back muscle, shoulder, arm and hand. These spasms started before any others, so how come they are not classed as Dystonia? Or my leg spasms, where you can even see the muscles moving as they spasm? 

Anyway, they say mostly Functional Dystonia. I get to a point I don’t care what they want to call it all, I just want looking after properly! 

My insides hurt so much today, my abdomen doesn’t get much of a work out anymore due to my disabilities. So last nights Involuntary Abdomen Spasms have left their memory, leaving me feeling in more pain than usual.

The International Symbol Of Access, Image from Wikipedia.

It may sound weird, but as a Chronic Pain Sufferer, you actually get used to your pains and find ways to deal with them. But the unexpected pains, additional pains, they are ones we are not used to so they hurt more.

Well, it’s going to be another hot sunny day here. I hope you all have nice weather where you are too.

As always, thanks for reading and take care X 

Personal Independence Payment (PIP)

Information for all disabled people who claim benefits, and the new upcoming change to our DLA and Mobility benefits system payments with effect from 8th April 2013.

When will it effect you?

Claiming PIP
https://www.gov.uk/pip-checker
This is the link to check on when you may be effected by the new Personal Independence Payment (PIP) and when you can expect to have to reclaim for this instead of the old Disability Living Allowance (DLA) which is all changing this April 2013.

Here is the information given on the Government Website of what the rates are to be –
https://www.gov.uk/pip/what-youll-get

What you’ll get
Personal Independence Payment (PIP) is paid every 4 weeks. It’s tax free and can be paid if you’re in or out of work.

It is made up of 2 components (parts). Whether you get 1 or both of these depends on how your condition affects you.

Daily living component
Daily living component Weekly rate
Standard £53.00
Enhanced £79.15

Mobility component
Mobility component Weekly rate
Standard £21.00
Enhanced £55.25

Video Talk On Functional Neurological Movement Disorders

Here is a great video talk, on Functional neurological movement disorders by Dr Jon Stone from Edingburgh.

This is his speciality, and he has done years of research on our disorder. The slides that come with the talk are interesting, and he talks about other videos which are not shown in this talk video but the links are underneath.

http://youtu.be/w4obwKD8JLU

This is Dr Stones website: http://www.neurosymptoms.org

Below are the links to other sites mentioned in the talk:

NBPA: The North British Pain Association:
http://www.nbpa.org.uk

Hysterical Gait:
http://wellcomelibrary.org/player/b16678643#?asi=0&ai=0

Understanding Pain: What to do about it in less than five minutes?
http://youtu.be/4b8oB757DKc

I hope you find this video information as valuable as I do, and as always I will continue to share anything I think is truly valuable and not overload us with information unrelated.

New Information Added

Check out the new page in the pull down for information, about “Foot Massaging”

Hope it helps some of you 🙂

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Glass Raised In The Air – But Why?

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It is very possible that you may have seen the above quote before, and I’m sure you all have your own thoughts and take on the story behind the words.

Here are mine 😉

Putting the glass down is easier said than done in some cases, as the person may have no idea what the glass contains, or why they picked it up in the first place.

Psychology can be an unmeasurable science. It can be a wonder, it can be interesting, it can be mind expanding, knowledgeable and clever.
Yes, psychology is very clever.

It can also be a lot of mumbo jumbo, but it’s up to the individual to sort out what’s in their head in the end.

No matter how many questions a psychologist can ask a person, if they don’t ask the one that finds the correct answer, then the glass is left raised in the air.

Makes you think doesn’t it?

These are my thoughts anyway, at this moment in time 😉

It’s Our Functional Movement Disorder Awareness Week! 

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During our week of Functional Movement Disorder Awareness, I would like to look at other things that may be part of the reason why we have this disorder.

Anxiety, Depression, IBS (irritable bowel disease), all of which I myself suffer with, can impact upon the gut. It plays a big part in our daily lives.

You may have seen, or heard before, about how the food we eat which goes into our gut can effect us. What happens in the workings of the gut, can have a connection to the brain. Changing the way the brain works, and also giving reasons behind brain inflammation or brain degeneration through the gut-brain connection.

I’ve been looking at this for a while, and I have been taking those little probiotic drinks for years, to put good bacteria into my stomach. I have a lot of stomach problems, and the drinks do seem to help a little. 

Here is a link to a study being done, relating to the gut and its relation to Multiple Sclerosis. As you know, we suffer many of the same symptoms as MS, so surely this could be a related factor to our disorder as well.

Take a look, and decide for yourself.

http://www.psypost.org/2016/05/exploring-gut-brain-connection-insights-multiple-sclerosis-42704

What are your thoughts on this, do you have problems like this too?

Welcome

Welcome to my site, I am a “Functional Movement Disorder” Sufferer.

I decided to set up this site to share any information and knowledge I have found, about this “very little known about” disorder.

*PLEASE NOTE THAT THIS SITE IS ALL MY OWN THOUGHTS AND INFORMATION I HAVE FOUND, PUT TOGETHER TO HELP OTHERS IN THEIR SEARCH FOR ANSWERS THE SAME AS MYSELF.

This site will grow slowly, as I gather together all the information I have already found. Along with the new information I find in my continued research, which I will put on in time.
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Through researching for information on this disorder for myself, I found there to be very little out there to find.
I looked on the worldwide web, where there is information about what the movement conditions for this disorder are. Only I found nothing about the diagnosis process, or the following process of treatment and what is involved. What we as patients can expect to go through, and the walls that we constantly come up against.

The piles of forms and paperwork that we have to fill in, if we need to make claims from insurance companies, for DLA, for ESA, right through to applying for Blue Badges for disability parking, or concessionary passes etc.

The appointments we have to go through, and the sucession of follow up appointments. The different Doctors and Consultants we are required to see, and the tests we have to go through. Firstly to get to a diagnosis, then the following assessments for any claims we make. The refusals that you may have, and the following continued push to prove that your claim is your right. The ongoing battle against both your body fighting itself, and the battle to keep going through all the closed doors.
The total and utter resignation you may feel many a time, and the ongoing tiredness and fatigue.

I also trawled to a lot of bookshops, only to find that even the largest bookstores did not have any books on this condition. I even went to a main University bookstore, but to no avail.
I was also very surprised to find that it is not listed on the lists of Neurological Disorders on the Movement Disorder sites that I did find.

Interestingly, there seems to be a selection of names for the same disorder:

* Functional Movement Disorder
* Functional Neurological Disorder
* Functional Dissociative Disorder
* Dissociative Disorder
* Conversion Disorder
* Functional Neurological Dissociative Disorder
* Functional Neurological Movement Disorder
* Psychogenic Movement Disorder
* Functional (Psychogenic) Movement Disorder

All of the above diagnosis’ are in fact the same disorder, which can lead to confusion when left to look for information about the condition you have just been diagnosed with.

I hope that with shared knowledge, we can get this disorder more well-known about and so making the struggle for sufferers less, along with helping their families and carers to gain an understanding too.

Please feel free to get involved. You can comment, or you can contact me by email using the contact form.
Thank you.

My Story

I haven’t been at work since Monday 30th of January this year 2012. I had a sudden onset of head spasms, and other body spasms. I have gone downhill fast over the year. January my head spasms started. February my neck kept twisting and jerking sideways. March my legs started to go weak and wouldn’t …

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An Update On Me ;)

I can’t walk anymore without walking sticks, crutches, my wheeled walker or I also now have a mobility scooter. I have funny jerky movements, and can seem to have a tremor at times. My left leg jumps a lot, due to pulling in my abdomen, my hip or the calf muscle all spasming. My neck, …

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4 comments

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  1. Andrea

    Hi Julia yes it was the same one I was pointed to by my Neurology Consultant as well. It has a wealth of information all about the different symptoms and that come with this disorder.
    I have linked to it on the “Helpful Links” page 🙂
    Unfortunately what I find it doesn’t do is go further, to give the understanding. To fill out the picture and consequences this disorder brings with it. I wanted more, to know the why and how. To find reasons, and information more than just on a medical level from one Dr who has an interest in the disorder. In fact, I was and still am dumbfounded that so few Drs have an interest in the disorder or know so little about it.
    My website is the journey from a patients view point, the diagnosis and time, years it can take. Through to the eventual start of treatment, the forms of treatment, and hopefully the outcomes that patients can look to in the future.
    I have been rather ill lately so I know my site is limited, but as many sites they take time to build and I hope it will get there eventually. With more information of the treatment and psychological journey, along with other interesting information I find that I feel may be of interest to share.
    I hope you find the site of some use to yourself also.
    Thank you for your comment 🙂

  2. Julia

    Hey, have you had a look at neurosymptoms.org? It’s a website by a movement consultant neurologist and I found that very useful. My neurologist pointed me in the direction of it when he diagnosed me x

  3. Andrea

    Hi Nicola, I am so glad my site is helping you. Although I do need to just say, that I am like you a sufferer. Everything I put on this site is from my research and personal experience, I am not a medical person.
    I set this site up because there is little information for us to find, and I wanted to explain our disorder in as easy a way as I can. Without all the medical terms that can be hard to understand, and I want to help others like me.
    We as patients with this disorder, start to become specialists in it by going through it and all the information we find along our journey. We end up knowing more than our local doctors, but we are not doctors just sufferers that begin to know all about our disorder.
    I hope your appointment goes well, and that your day is a good one.
    Thanks for your lovely comment 😀

  4. Nicola

    Fab site Andrea! You site is so good I’m taking a print out to my Gp this week of all the symptoms. He’s very understanding but he’s learning about Fnd like I am. I look forward to hearing of any updates you have & I will definitely let you know if any treatment I have seems to help & of news I may find through my investigations into this mad, mad condition! 🙂 xx

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I Wish I Was Invisable

Sometimes I write poetry, to get my hurt and feelings out.  The painting is also one of my own, as when I got Functional Movement Disorder I found all my artistic side 😊 So I decided to share one of my poems with others who understand. Just click the link x https://youtu.be/CZlBY8-UOKYhttps://youtu.be/CZlBY8-UOKY I hope you …

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Aww I Hurt

Image from Google pictures. I’ve been busy all week, trying to write about my weekend away in London over the Bank Holiday weekend at the end of May. I will get it finished eventually, or maybe break it down into parts to get it posted. As it is all about mobility issues I had, that …

Read more

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